First, a web page or blog might be best. Sum up the request concisely so we can spread links around Facebook and Twitter. That's how we spread the word and get the ball rolling. Similar to previous campaigns, a simple to the point message with a direct request of people joining. Daily emails seem appropriate. A tag phrase would be good. Something about keeping the promise on progress report, can't tap the usual font of pointed phrases today....

A volunteer to be copied on the emails so we can keep count is Ideal.

Be careful with words about advocacy as the CAA is part of the WG and therefore also has bought into some level of secrecy as a part if the proposition. Not a criticism, just what I think the situation is. Now they should be telling the BWC loudly that the patient community deserves the promised information, but that's another conversation, maybe they are.

Part of the message is that we tried knocking and ringing the bell and no one answered. So now we're a banging on that drum all day.

I can't work and I can't play so I'm gonna bang on the drum all day. With apologies to Todd Rungran.

Everybody, work any contacts you have, including docs if you can do it politely.

First, a web page or blog might be best. Sum up the request concisely so we can spread links around Facebook and Twitter. That's how we spread the word and get the ball rolling. Similar to previous campaigns, a simple to the point message with a direct request of people joining. Daily emails seem appropriate. A tag phrase would be good. Something about keeping the promise on progress report, can't tap the usual font of pointed phrases today....

A volunteer to be copied on the emails so we can keep count is Ideal.

Be careful with words about advocacy as the CAA is part of the WG and therefore also has bought into some level of secrecy as a part if the proposition. Not a criticism, just what I think the situation is. Now they should be telling the BWC loudly that the patient community deserves the promised information, but that's another conversation, maybe they are.

Part of the message is that we tried knocking and ringing the bell and no one answered. So now we're a banging on that drum all day.

I can't work and I can't play so I'm gonna bang on the drum all day. With apologies to Todd Rungran.

Everybody, work any contacts you have, including docs if you can do it politely.

Unfortunately, they don't give an email adress on their website. Also, i don't see how that post adress could work, but it probably does. And i don't have their email because i don't have much to do with them. I'm sure they're ok and i was happy to be able to talk to some of them a couple of times to learn about CFS at the beginning, but i always felt like their not doing enough or not what's needed (sorry if that offends them).

First, a web page or blog might be best. Sum up the request concisely so we can spread links around Facebook and Twitter. That's how we spread the word and get the ball rolling. Similar to previous campaigns, a simple to the point message with a direct request of people joining. Daily emails seem appropriate. A tag phrase would be good. Something about keeping the promise on progress report, can't tap the usual font of pointed phrases today....

A volunteer to be copied on the emails so we can keep count is Ideal.

Be careful with words about advocacy as the CAA is part of the WG and therefore also has bought into some level of secrecy as a part if the proposition. Not a criticism, just what I think the situation is. Now they should be telling the BWC loudly that the patient community deserves the promised information, but that's another conversation, maybe they are.

Part of the message is that we tried knocking and ringing the bell and no one answered. So now we're a banging on that drum all day.

I can't work and I can't play so I'm gonna bang on the drum all day. With apologies to Todd Rungran.

Everybody, work any contacts you have, including docs if you can do it politely.

Done blabbering.
Otis

Click to expand...

Otis you are a truly lovely avatar in my life! Would you be up to coordinating the blog/website thing - what about XMRV global action??? Would they be interested you think? I didn't get into blogging before I got sick and now I'm too stupid to learn but I can e-mail up a storm. I've been e-mailing and posting since the days of the BB's and Lynx. (grins)

I love the Todd Rungran refrence and your are exactly right we knocked politely now we need bang the Gong! (grins)

True the CAA may not be able to participate but I don't think leaving their name off the list would be politically correct. (??) I think who ever answers on behalf of the BWG (probably our buddy Dennis Mangan) would have the where withal to say the CAA can't play. (??)

Something along the lines of . . . The NIH's has recently indicated a willingness to treat the patient community with the respect that has been lacking for some 30 years in keeping with the NIH's commitment the patient community requests to be keep in the loop of all information regarding the Phase trials including the Phase II portion regarding the protocols. The community request of the NIH that they make the information from the Phase II trial available to the patient community through the various advocacy groups (list groups with e-mails). The ME/CFS community wished to work in tandem with the NIH and part of that effort is transparency on part of the government agency's which we and our family's fund. . .

Maybe too formal, we can tweak it all up over the week end, whatch think????

I personally feel like it's primarily the job of key organizations like the CAA or key figures in advocacy (Cort? ) to talk to those people.
But of course everybody should do what he or she can and it can't hurt to have "them" feel that many of us are watching and waiting.
Probably i see this in a more European way, so please do what you have said above.

Since the CAA's Dr. Vernon is part of the BWG the CAA is certainly informed about the current status of knowledge of the BWG.
And they are there for us and they know how we feel and how badly we are waiting for information.

So what do they have to say or offer to us? We should ask them, too.

Jspotila, if you or anyone else read this, can you please answer this?
Will you help us get answers?
If not, why not, and what can you do for us? What should we do?

Great. And if he said "scientific community" that does not only involve a selected group, in my understanding, so it means to release the info to anyone. You can't inform all the scientists without letting the public get that info too, i guess.
Certainly they were aware of the situation back then already, when that was said, so i don't see any good reason why the would change their mind now.

Edit: If that was said, i think we can demand a statement wheter that is still valid or not and if so, when the info will be released. And if it's not valid anymore, then what the reason for the change is. (It will be a bit hard to formulate for them, to satisfy us without triggering what they don't want to trigger, but they can do it, they're paid after all or even elected)

Click to expand...

Right - you can't inform every researcher on the sly who's studying this - they don't even know everyone who's studying this.....If I was a researcher studying XMRV I would be pissed right now if I am blowing my grant dollars down the tubes because the BWG has decided not to share.

I personally feel like it's primarily the job of key organizations like the CAA or key figures in advocacy (Cort? ) to talk to those people.
But of course everybody should do what he or she can and it can't hurt to have "them" feel that many of us are watching and waiting.
Probably i see this in a more European way, so please do what you have said above.

Since the CAA's Dr. Vernon is part of the BWG the CAA is certainly informed about the current status of knowledge of the BWG.
And they are there for us and they know how we feel and how badly we are waiting for information.

So what do they have to say or offer to us? We should ask them, too.

Jspotila, if you or anyone else read this, can you please answer this?
Will you help us get answers?
If not, why not, and what can you do for us? What should we do?

Click to expand...

They may be caught between a rock and hard place. They could say "To hell with our agreement - we're going to inform the patients (and the researchers!" They are the big boys in town - they kind of have to be invited back to anything significant that goes on. I think Suzanne Vernon would have a tough time because she is a researcher and the CFIDS Association is now all about research and they are trying to form a research network. Would informing on the BWG's research harm that? I think it could actually. If they were just doing advocacy that would be different.

The CAA could support us privately....perhaps giving us advice on where to send our message for the most effect.

In my last email to Glynnis and Holmberg I simply asked for them to give some reason why they weren't divulging the information. That has gotten no response.

It would be easy for them, if they were going to divulge it, to just say "we are going to divulge it at X point in time" or "shortly" or whatever. I think either they just blew me off (another frigging patient) or they're just not going to divulge it.

The Phase II portion is only about the correct protocols in order to get everyone on the same page. A lot of groups will try to develop "novel" assays in the beginning because of patent rights as well as bragging rights. But once there is a link established with illness then letting folks play looks bad. So there is no "public safety" or panic problems with this stage of the work.

Click to expand...

Right! LeGrice did personally tell me the contamination issues would be cleared up as well but Glynnis did not say that.

Why the secrecy about how long to let the blood sit out? Or be in storage? Or if plasma or PMBC's are better? These are hardly state secrets! So it must go beyond what Glynnis said yet the assay work is not to be completed until the beginning of the year - that was my recollection.....So the why the hush-hush.

It's been a week since that meeting... which suggests the BWG finished up Phase II at least a week before that.

I still don't get why Lipkin called everyone together to tell them about HIS study. Why in the world does everyone need to know about HIS study? Its a study - a great study but its still last time I looked, just one study. It doesn't make sense to me.

And why call an patient support group - your funnel to the patient community - to an meeting - and then not allow them to say anything about it? That doesn't make sense either. I'm going to put my tam o shanter on! :headache::headache::headache:

a) it's not that they discovered a contaminant - that information they could release. Its been a week now...they've had plenty of time.
b) it's not about blood storage or prep or whatever - that would have been released immediately
c) they have found SOMETHING; it could be a contaminant or something else - but they need more evidence; they need to dig deeper before they release it - so Lipkin's lab is doing that.
d) They're just being stupidly secretive - which I don't think is happening. Dr. Glynnis said 'we plan to release the info ...so she left the option open for something that could happen that would make them not want to release the info. I assume that's what happened and, whatever is going on, it's of a signficant enough nature that Lipkin felt he wanted to speak to everyone personally.
e) fill in the blank

Agree that perhaps email to Dr Vernon might be the most direct route. I would do it, but am not a member of the US CAA group, (I'm member of UK group), & they have not responded to a previous email I sent.

Failing that, ask WPI - at least we can ask something innocuous such as, 'How is this promised info likely to be released to us and any idea when this is likely to be please?'

They're just not that bothered about keeping us informed. They'll get arround to it at some point, but it's all a bit complicated and everyone feels like they've got more important things to do than to write a carefully phrased press release.

They may be caught between a rock and hard place. They could say "To hell with our agreement - we're going to inform the patients (and the researchers!" They are the big boys in town - they kind of have to be invited back to anything significant that goes on. I think Suzanne Vernon would have a tough time because she is a researcher and the CFIDS Association is now all about research and they are trying to form a research network. Would informing on the BWG's research harm that? I think it could actually. If they were just doing advocacy that would be different.

The CAA could support us privately....perhaps giving us advice on where to send our message for the most effect.

Click to expand...

Sure, they're in an uncomfortable position in that regard (but also in a very priviledged one). I respect that and i do not expect and do not want them to break their agreement. I think it's absolutely crucial for them to stick to their agreement because they need to be serious and trusted. I want them to be in places like the BWG (i like a lot that they and the WPI are in there) and that can only happen if they stick to their word.

But they might help us, their "clientele", out, as far as their agreement with the BWG allows them and as much as they can without hurting their reputation.

Any info will be very much appreciated, at least by me. The results or info like "the results are there, but we are not allowed to share them". With or without mentioning a reason for that. Or "the results do not allow any conclusion at this point". Or "wait 3 more weeks, please", or "write or call to that and that person/agency". Whatever, they know we are waiting and they should communicate to us in one way or the other, i feel.

In my last email to Glynnis and Holmberg I simply asked for them to give some reason why they weren't divulging the information. That has gotten no response.

It would be easy for them, if they were going to divulge it, to just say "we are going to divulge it at X point in time" or "shortly" or whatever. I think either they just blew me off (another frigging patient) or they're just not going to divulge it.

Click to expand...

They may do that, but that "frigging patient" is speaking for the probably most active ME/CFS internet community and that community is in a way the vanguard of a million or more patients. So if they don't want to speak to some sort of representative then yes, we should remind them we are here. That's how i think things should work, CFS orgs or communities should talk to researchers, politicians etc. through "representatives" that are known and trusted by those people but if they don't want to talk the "base" has to make some noise and become uncomfortable, if necessary.
I'm not saying they have to share everything at any cost, right now. But i think we can expect some reaction, some statements.

I wondered if they thought they had got to the bottom of it but the consequence of that would be that some papers' conclusions have been proved wrong, and possibly those papers' authors are refusing to accept it and there's a dust-up. Not sure I've even convinced myself with that theory, though.

I agree it would be good if the CAA could get them to agree to give a timescale. They need to know we're waiting.

They're just not that bothered about keeping us informed. They'll get arround to it at some point, but it's all a bit complicated and everyone feels like they've got more important things to do than to write a carefully phrased press release.

That's my best guess.

Click to expand...

well i know they don't much care for us (given the past 25 yrs) but that's really quite disrespectful......thousands of sick ppl have written letters/emails over the past couple of months sharing their stories and demanding action. we as a patient community were told we would be provided answers/udates and hopefully action....yet if your statements turn out to be true, it's still just a bunch of lies coming from them and they really just don't care/give a shit about us

....the optimist in me does not want to believe that....i want to believe that mangan, lipkin, the blood working group, and all the new ppl on the case do care...we know judy, nancy, etc do care.

Since the CAA's Dr. Vernon is part of the BWG the CAA is certainly informed about the current status of knowledge of the BWG.
And they are there for us and they know how we feel and how badly we are waiting for information.

So what do they have to say or offer to us? We should ask them, too.

Jspotila, if you or anyone else read this, can you please answer this?
Will you help us get answers?
If not, why not, and what can you do for us? What should we do?

Click to expand...

I do not have access to some of the information we so desperately want because access is restricted to participating members of the BWG or other task forces. So there are some questions I simply cannot get answers to. Having said that, I hope I can offer some clarifications:

The Lipkin meeting was not about the BWG. It was about Lipkin's own study funded by NIAID. Obviously there is overlap between the BWG and people who went to the Lipkin meeting, but they are not one and the same.

Why did Lipkin call the meeting? Because that is his process. The excerpt from "Microbe Hunters" earlier in this thread (I think??) sets out how he approaches these kinds of studies - he starts by bringing the stakeholders together.

The discussions from the Lipkin meeting are embargoed - completely. No one who attended can/should talk about the protocols/study design/related issues or anything else that was discussed.

Having said that, my understanding is that Lipkin believes in transparency and accountability as part of the process.

As far as the BWG phase 2 and why no information has been released, despite Dr. Glynnis's comments at the CFSAC meeting . . . . my thought is that maybe it is simply not finished and therefore cannot be released. Pretty much every stage of the BWG has been delayed and then released later than promised. I don't think we can draw reliable conclusions from a promised date slipping again.

Rumors abound. I try to avoid them! It just freaks me out and works me up. :worried:

The CAA believes that information on each BWG phase and other federal efforts should be made public as soon as possible (i.e. when they are finished), and we advocate for that on the BWG and AABB Task Force and with NIH. And that's not limited to XMRV, it is across the board with funding and public education issues.

We want this information as badly as everyone here! But we also want the science to be done right. Slipshod results help none of us, so I personally would rather wait a little longer if it means the science is being done correctly and we can rely on the results.

I hope this helps. If anyone has more questions, let me know. PM me if you like. I do my best to keep up with all the threads, but today's pain management visit didn't do much to help me manage today! :In bed:

ETA: Sasha said that the BWG needs to know we are waiting. Oh believe me, they do. The BWG and NIH and Lipkin are very very aware that we are all on pins and needles waiting for results.